I finally understand

Colston is 10 weeks old today. 

Justin and I just celebrated six months of marriage.

I finally understand the meaning of "time flies".

Instead of weekly appointments with the cardiologist, we now see him every 10-14 days. Colston's heart still looks great right now. He also weigh 7 pounds 1 ounce!! He is growing so fast and is finally out of all his preemie clothes!

Just in the last week he has been smiling like crazy. He is also starting to coo and I am just waiting for his little chuckle.  With everything that he has gone through so far, it is so amazing to see how happy he is. Not that I want him to be going through this whole ordeal, but I am thankful that it is when he is too little to remember it. 

There's not much else to report right now. I am so thankful that he is doing so well and the only thing I have to update is his new weight. 

I hope whoever is reading this has a great day :)

Colston has been doing great! We see the cardiologist about every 10 days or so and this last Friday Colston weighed 6 pounds 5 ounces!! A whole pound since he was born two months ago. We are so thrilled even though it's a slow climb, but it is a forward climb and that's all that matters. 

The doctor does an echo on his heart every appointment and Colston's stent and bands look perfect and everything is working as it should right now.  

One of the hardest things about him doing so good, is constantly having the thought in the back of your mind that something bad is going to come out of nowhere and it will set us back.  Trying to be optimistic all the time takes a lot of energy when you read so many stories of other heart babies that all have different types of setbacks and all you can wonder is, "I wonder if that is what ours will be."  It seems like every baby has a set back of some sort, be it a leaky valve or the worst, cardiac arrest. We've already had the latter so I'm hoping that isn't in the cards for us anymore. 

It is a difficult task talking to other families with the same heart condition because no two cases are the same.   I think I have scared myself into always thinking the worst from talking to the moms in my support groups.  Some of them have babies that had to go home on oxygen, or with a feeding tube, and also on six or seven different medicines. Colston is on two and was over saturating his oxygen.  I kept thinking...are we that fortunate? There's no way. The doctors are over looking something. For as bad as this is, we're doing really good. 

There was a small period of time where I let my paranoia get the best of me and I was in a constant state of worry. Ask Justin how many times I have asked him if he thought Colston looked blue, or if his breathing seemed shallow. But I had to stop doing that, as hard as it is, because it was taking me away from appreciating that he is here now and not taking for granted this present moment. He is still here with us and instead of constantly thinking and worrying about the worst, I need to spend my time looking at his big brown eyes, snuggling him while I can, and thanking God everyday for giving me one more day with my son. 

No, the worry will never truly go away and we are still very early on in this journey, but it makes it an easier road to travel on when you have great doctors, an amazing husband that you can vent all your frustrations and worries to, and God. The power of prayer is an incredible thing and we are so blessed that it has been pointed our way.  Every day with Colston is truly a gift and one that we promise to cherish everyday. 

Colston has been doing great adjusting to life at home. We are still trying to get a solid routine down but with a baby, is there ever really a routine?  

The cardiologist was very please at his follow up appointment yesterday. Everything is still doing its job and all blood flow is going where it is supposed to. 

Yesterday marked six weeks since his open heart surgery. We got cleared to start doing tummy time and we can now pick him up under his arms (still very carefully though). Even though the doctor says the sternal precautions are lifted, it makes me nervous.  He is eating so much more now too, we just need the weight to stick. He has only gained three ounces since his appointment last week but at least it's still a step forward. Colston is getting longer too! Most of his preemie clothes are too small now. 

We can now add a small amount of breast milk to his formula. Even the cardiologist didn't think he had a milk protein allergy but just to be safe we are going to start out with just a small amount and we have to keep an eye out for bloody stools. 

It's humbling having a child with special needs. I know several women who have had babies all around the same time as us and it's interesting to see how our milestones differ. I go on facebook and see other moms who's babies have been doing tummy time since they were just a couple days old and can lift their head up. Or other babies that are smiling and have found their voice. 

It's always exciting seeing a baby do things for the first time, but when you are told your child will be developmentally delayed, there's an immense sense of joy when you witness them reach their milestones because you never know when it will happen or just how delayed they will be.  It makes you appreciate the things they CAN do. 

Colston's feedings for example. When we left the hospital, he had to take at least 48 mL a feeding.  

Now he takes double that. 

He eats just a little bit more every day and it makes Justin and I so proud.

But it's not without a lot of patience. Heart babies have a more difficult time digesting food so we have to give him breaks every 10-15 mL's and we also can only give him 30 minutes to eat. We also can't feed him on demand, which with a growing baby is extremely difficult because I have noticed him getting hungrier sooner than his three hour mark. 

Every day is an adjustment to what he is capable of. Everything is on his terms and his terms only.

One week home

Today marks a week that we got out of the hospital and almost a whole week being home.

 We had been down there for 50 long days. 

Being away from home for so long makes you realize how much you take for granted. You truly learn to appreciate the smallest things. For instance, we took Colston for his first walk in the stroller the other night.  You can't do that in Vegas. Not only because it is scorching hot all the time, but you also are in constant fear that you're going to get mugged...or worse. 

As we are walking a couple streets over from our house, we see this guy. 

Now you definitely don't get that in Vegas. There were about three more laying next to him. I told Justin it was too bad I didn't have my bow with me. ;)

Colston is doing great at home and we are loving that he is already on such a great routine from the hospital. He eats every three hours and he will let you know if you have passed that three hour mark. He sleeps most of the time too. He is loving not being bugged by doctors and nurses every couple minutes. 

We had our first cardiology appointment yesterday and the doctor is very happy with how Colston is doing. His oxygen saturation in Vegas was always high 90's, which is over saturating, up here at the higher elevation he falls into the normal range and is satting around 85. His echo looked great and the stent and bands are looking perfect. He is only on two medications and he takes them like a champ. He puts his lips around the syringe like it's a bottle. 

Our goal right now is to continue to gain weight. He is finally back at his birth weight of 5 pounds 5 ounces. Ideally they want him to gain an ounce a day but we ultimately will take any weight gain we can get right now.  

So for right now, we are just getting settled in at home as a family. 

And I mean, I think Colston is settling in just fine don't you?

He looks a lot more comfortable than he did in the hospital.

He also got his first bath. He was not a happy camper but I loved snuggling him in his towel after. 

And then after bath time, we get in some comfy pj's and fall asleep in either mine or Justin's arms. He is starting to smile too, but it's still like lip twitches. I had to snap the camera a couple times in order to get a good one. 

He is the sweetest little boy already. He loves being held and I am more than happy to oblige.  It's safe to say I haven't even unpacked yet because all I do is hold him. 

We're free!

Colston got to leave the hospital yesterday!

We are so ecstatic and still cant believe it. 

We are back at the  Ronald McDonald house for the weekend to make sure Colston does okay outside of the hospital environment before we drive 500 miles home.  Colston has a cardiology appointment Monday morning and hopefully we will get the all clear to go home!

Tell me he is not totally comfortable outside the hospital.

Our first night last night was great. We actually feel like a family now.  We can pick Colston up whenever we want, we don't have to worry about pulling leads off or tugging on his IV. 

He truly feels like ours now. 

We could not be more thankful to the nurses and doctors we had.  Everyone took such great care of us but we want to say a special thank you to Stephanie and Susan. 

Stephanie-

I don't know if you will ever read this but you were Heaven sent. You took such great care of Colston and I loved how you would actually talk to him and interact with him. 

I will never forget that you were the one who let me hold my son for the first time. 

Susan- 

You always made time to come see us at least once a day. We saw how busy you were and you always at least peeped your head in to say hi. You always asked how we were doing and if there was anything we felt needed to be voiced. You helped us when other nurses were busy even though you were getting ready to go home and never made us feel like our concerns were invalid. 

Justin and I truly consider you guys apart of our family and we can't wait to see you guys when we come down in 5 months for Colston's next surgery.

My kid is a junkie

Poor Colston.

After having to go back on the ventilator four different times and being pumped full of medicines, he is now having withdraws. He is very agitated most of the day and not much comforts him except for being held. Lucky us ;)

The PICU found us a rocking chair so we now spend most of the day rocking back and forth until he falls asleep. 

The doctors are watching his agitation and if it increases, they will have to give him Ativan to calm him and help keep his heart rate down, which sounds counter productive but they would start by giving him that and then slowly weaning him off. We are trying to avoid that route and quit cold turkey by keeping him calm natural ways like rocking him and holding him, and it seems to be working.

We are once again so close to going home. Our biggest hurdle is eating. The goal is for him to drink 50mL from the bottle. Right now he drinks about 30 and then gets tired and they end up putting the rest through his feeding tube. As soon as he can take the whole bottle for a consistent 24 hours, we will be on our way home! 

Back to "normal"

We are back to normal over here. Our version of normal that is.

Colston is doing great. His oxygen sats are high 90's, sometimes 100, which has the doctors and the nurses amazed. Usually heart babies don't sat that high. 

They are starting him back slowly on breast milk today. He's been getting nutrients through his IV and was given Pedialyte through his NG tube yesterday. Poor guy hasn't actually eaten since 1:30 am Monday and it is now Saturday. They want to start him out slow because he has had blood in his last couple stools. It could be from the aspirin but it could also be a number of things. They aren't terribly concerned with it which makes us feel better. One good thing about him not eating this week (hey, I had to find a silver lining somewhere) is that I have a good stash of breast milk stored up in the freezer at the hospital. 

Pumping has been a big love/hate relationship for me. On one hand I love that I am blessed to be able to produce milk because I feel like it's truly the only thing I can do for Colston. On the other hand, it is really testing my patience. It is proving to be really hard to stay on a strict pumping schedule when you are constantly exhausted. I started out pumping every three hours but as more and more things happen throughout the day, I find myself going 4 sometimes 5 hours in between pumps. Don't even get me started on pumping in the middle of the night. Justin and I usually dont get back from the hospital til about 10 pm so I will do one pump before bed, set my alarm for a 1 a.m. pump and then end up sleeping right through it.

As scary as the last week was, we are back on track to hopefully going home soon. To be honest, it scares me a little. I've become accustomed to hitting the nurse button every time I think something is wrong. I'm used to looking at a monitor to know if he is getting enough oxygen and to see how many breaths he is taking. It makes me nervous to go home without any sort of monitor and to be seven hours away from his doctors. If something were to happen at home, Colston would have to be care flighted down to Vegas. 

It's one of those things where you just have to trust that you will know the signs of what to look for and that God is right there with you. He was definitely right there with Colston going into cardiac arrest twice and He was right there with us afterwards. 

The emotional highs and lows of having a heart baby are very draining. We went from being a day away from going home to being told our son had to be revived. Throughout this whole journey, we have been told to expect the unexpected. But nothing prepares you for that. 

We are just so incredibly thankful to the Lord above that we are back on a high and we pray that it stays that way.